Nearly two-thirds of people with scleroderma undergo physical therapy — often called PT — and are generally satisfied with their care. But nearly half of all patients need more information on such treatment, according to the results of a questionnaire conducted in the Netherlands. Individual therapy, provided by…
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
Changes from the norm in the electrical conduction of the heart — called cardiac axis deviations — are “common” and indicative of poorer outcomes in people with systemic sclerosis-related pulmonary hypertension (SSc-PH), a study reported. Because cardiac axis deviations are easily measured by electrocardiography (ECG), monitoring for such deviations…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
Under-the-skin treatment with tiny vesicles produced by mesenchymal stem cells significantly lessened skin abnormalities and scarring, while reducing markers of disease and inflammation, in a mouse model of scleroderma, a study showed. Notably, these beneficial effects — similar to those of treatment with the bone marrow-derived mesenchymal stem cells…
Scleroderma involving the lungs is associated with a greater degree of skin scarring, or fibrosis, according to a new research model that seeks to predict a person’s risk of organ-specific complications involved in that disorder. The study, “Correlation Between Skin and Affected Organs in 52 Sclerodermic Patients…
The Scleroderma Foundation is announcing that it has more than doubled its annual research funding, to $2.7 million, and increased the amount of its grant awards by $50,000, to $200,000. To accommodate the change in funding opportunities — effective for the 2022 grant-funding cycle — the nonprofit organization has…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
Despite immunosuppressive therapy, skin and lung involvement still progresses in about 20% of people with early or at-risk diffuse cutaneous systemic sclerosis (dcSSc) within the first three years, according to a study in the U.S. In addition, most people in the at-risk group went on to develop dcSSc during…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
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